Services and Resources
- - - - - - - - - - - - - - - - - For Parents with Children Ages 0 to 18
For Individuals and Families without Children
“After receiving a diagnosis of a severe genetic disorder, there is often confusion with the individual, parents, and family. This confusion occurs before functional adjustment can take place. During this period of confusion and initial adjustment the genetic social worker can be of great service to the individual and/or family by putting them in contact with appropriate resources, whether financial, medical, or educational” (Mealer, F.W., Dharmdeo, N.S., & Murray, O.S., 1981).
Introduction
General Description of Services for Parents and Children Ages 0 to 18
How to Access Services
Types of Services and Agencies
Introduction
Here you will find information about services and supports for parents expecting a child with special needs. This section will also provide information about services and support for children from birth to eighteen years old. The first part will give you a general description of the services available in Hamilton and surrounding areas. The section will then explain how to access these services, what services are available, and some agencies that provide these services. We will only provide information on public agencies rather than private ones, but we will explain how you can find information about private agencies.
General Description of Services for Parents with Children Ages 0 to 18
Within Hamilton, numerous agencies, organizations, and practitioners work with parents and children with special needs associated with genetic disorders. The provincial Ministry of Child and Youth Services (MCYS) and the Ministry of Community and Social Services provide funding for many agencies. There is also the option of obtaining private services, such as social workers who have set up a private practice and provide counseling. This segment will help you understand what services are typically required for these families and where to find them.
How to Access Services
The best way for a family to access a multitude of services is to go to a social worker who can conduct an intake assessment. Many family doctors’ offices have social workers available. By having one person as a contact, families can obtain the referrals they need more efficiently. There are also many public agencies with social workers on staff. These agencies can be great starting points for families. We have listed some of these agencies below.
Children’s Rehabilitation Team. (2007). Retrieved from http://www.childrensrehabengineeringteam.com/grants06.htm
Types of Services and Agencies
Assessment
An assessment is an evaluation conducted by a professional, such as a social worker. The assessor will collect information and make recommendations on the child and/or family’s needs.
Where: CPRI; Hamilton Health Sciences;
Audiology
An audiologist is a healthcare professional that specializes in Audiology. They are able to diagnose, treat and monitor hearing disorders.
Where: Early Words
Child Care or Play groups
Child care and play groups can offer children with special needs the opportunity to learn life and social skills. It can also offer families time off from care-taking duties, which is extremely important when caring for special needs children.
Family Doctor
A family doctor is a medical doctor who specializes in the treatment of an individual’s general well-being. Family doctors operate in their own private practices. By having a family doctor, parents of special needs children can access a variety of additional services, as these doctors can refer families to many non-medical services. There are many different ways to find a family doctor although it is well-known that there is a shortage in Ontario.
Where: Heath Care Connect
Financial Assistance
Caring for a child with special needs is usually more expensive than caring for an average child. There are various assistance programs and tax benefits available for parents, depending on their income and their child’s situation.
Helps parents with some of the additional costs of caring for a child with a disability
Ranges from $25 to $410 per month but it depends on the family’s income, child’s costs, how disabled the child is, and what supports the child needs
The child must be under 18 years old, live at home, and have a severe disability
Parents apply through the Ministry of Child and Youth Services
Helps families who are caring for a child with a developmental or physical disability
Helps the child remain at home
Income is not a determinant for whether a family will qualify
Financial support depends of what the child needs
Families apply through the Ministry of Child and Youth Services
This program provides financial support for many kinds of equipment and supplies such as: wheelchairs, walkers and strollers, hearing aids, and artificial limbs
Families can apply through the Ontario Ministry of Health and Long-Term Care
Families of children with special needs can qualify for this tax credit by having the child’s family doctor fill out the T2201 Disability Tax Credit Certificate
This credit can save families $1500.00 a year in income taxes
Infant Development
“Neuroscience and human development studies show that experienced-based brain development in the early years of life affects learning behaviour and health throughout a person’s life (THE EARLY YEARS STUDY, 1999).
Parenting Support and Courses
Having a child with special needs can be challenging, as parents have to readjust and learn how they will care for this child. Parents can take a parenting course to develop special skills related to parenting a child with special needs.
Support Groups
Raising a child with special needs is challenging. It may be helpful for many families to join general support groups for families in a similar situation or a support group for families of children with a specific disorder. The most common genetic disorders are:
Down Syndrome
Cystic Fibrosis
Sickle Cell Disease
Tay-Sachs Disease
Spina Bifida
Where: Down Syndrome Association of Hamilton; Canadian Cystic Fibrosis Association; Sickle Cell Association of Ontario; Canadian Association for Tay-Sachs and Allied Disease; Spina Bifida and Hydrocephalus Association of Ontario
Occupational Therapy
Therapy designed to restore or maintain a patient's ability to perform tasks used in daily living, often through developing ways to modify or adapt activities (The Myositis Association, 2010).
Where: Ontario Society of Occupational Therapists ;For further information, contact your family doctor for a referral.
Personal Support Workers
A Personal Support Worker is a health care professional who offers one-on-one care for persons requiring individual assistance, including special needs children. This service is typically available for older children.
Where: For further information, contact your family doctor for a referral.
Physiotherapy
Physiotherapy is the treatment of a disease through physical activity with the goal of restoring and/or maintaining functional activities (The Myositis Association, 2010).
Where: College of Physiotherapists of Ontario ;For further information, contact your family doctor for a referral.
Therapy or Counseling
Parents of children with special needs often need additional emotional support. They can attend individual or family therapy/counseling.
Where: For further information, contact your family doctor for a referral.
Respite
Respite offers planned temporary relief and rest for families of children with special needs. The respite may be provided at home or out of the home. It also gives children the chance to socialize with others and develop their social and recreational skills.
Speech Therapy
It is a medical service that diagnoses and corrects speech or language defects that children with special needs may have.
Where: Early Words
Human Growth Hormone. (2010). Retrieved from http://www.humangrowthhormone.org.uk/news/human-growth-hormone-and-cystic-fibrosis
Individuals/Families without Children
Introduction
General Description of Services for Families
How to Access Services
Types of Services and Agencies
Introduction
Here you will find information about services and supports for individuals or families without biological children due to genetic factors. These factors may result in a termination of a fetus or the conscious decision not to have children because of an inherited gene. This section will provide information about services and support for these individuals or families. First we will provide a general description of the services available in Hamilton and surrounding areas. The section will then explain available services, how to access these services, and some agencies that provide them. We will only provide information on public agencies rather than private ones, but we will explain how you can find information about private agencies.
General Description of Services for Individuals or Families
Within Hamilton, numerous agencies, organizations, and practitioners work with individuals and families dealing with the emotional outcome of not being able or choosing not to have children due to genetic factors. Many of these services are associations that receive some public funding and donations. There is also the option of obtaining private services, such as social workers who have set up a private practice and provide counseling. This segment will help you understand what services are typically utilized for these individuals and families and where to find them.
How to Access Services
Usually, when an individual or family learns of a genetic disorder in a fetus, they have already met with various medical professionals. The same is true for people who learn that they carry a gene for a genetic disorder and choose not to have biological children. Therefore, people in this situation are often connected to many of the services we have listed by these professionals. Another way to access the services below is through a social worker at a family doctor’s office or at a general social work agency. It is important to know that people in these circumstances face a variety of options when making family planning decisions, which our list attempts to reflect.
Types of Services and Agencies
People’s Daily Online. (2006). Retrieved from http://english.peopledaily.com.cn/200612/14/eng20061214_332476.html
Types of Services and Agencies
Adoption
This is a potential option for individuals or families who cannot or chose not to have children.
Where: Adoption Counsel of Canada; Children’s Aid Society of Hamilton; The Catholic Children’s Aid Society of Hamilton
Assisted Reproductive Technology (ART)
ART refers to the process of using various methods performed by a medical professional to assist in the efforts to become pregnant. Examples include: in vitro fertilization; surrogacy; donor sperm or donor egg; use of fertility drugs.
Where: For further information, contact your family doctor for a referral.
Foster Care
Foster care is full-time, substitute care of children outside their own home by people other than their biological or adoptive parents or legal guardians (Children’s Health, 2010)
Sperm Donation
This is the process by which a third-party man donates his sperm to aid in a woman’s efforts to become pregnant. This may be an option for individuals or families where the man carries a gene of a genetic disorder and does not want to risk passing it on to a child.
Where: For further information, contact your family doctor for a referral.
Surrogate/Surrogacy
A woman who bears a child on behalf of a couple unable or choosing not to have a child, either by artificial insemination from the man or implantation of an embryo from the woman
Support Groups
It may be helpful for many individuals and families to join general support groups for those who terminate or chose not to have children due to genetic factors.
Where: IAAC
Therapy/Counseling
Individuals and families experiencing a termination or choosing not to have children due to genetic factors often need additional emotional support. They may find one-on-one or family counseling beneficial
Where: Planned Parenthood Society of Hamilton; For further information, contact your family doctor for a referral.
ABC News. (2010). Retrieved from http://www.abc.net.au/news/stories/2010/09/02/3000900.htm
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